Archive for the ‘Uncategorized’ Category

I’m still living with RA after being diagnosed in 2008. But like many patients, symptoms tend to rear their head prior to being formally diagnosed. For me, that was bilateral iritis (inflammation) in 2004. The ophthalmologist questioned me about joint problems and with nothing to note, we ignored possible autoimmune causes. In 2007 I had my first joint surgery – the left ankle. In 2008 I had surgery on the right ankle. Then other symptoms prompted my perceptive primary care doctor to send me to a rheumatologist. Since 2007, I’ve had multiple surgeries associated with RA – three ankle, both shoulders, joint replacement in both thumbs, cervical discectomy and vertebrae fusion, right elbow, and sinus surgery to treat persistent infections caused by RA meds. The 11th surgery was one week ago on the left elbow. The procedure was designed to clean up damaged tissue caused by ongoing RA related inflammation in the joint. The surgeon said that my elbow “was on fire” from RA and the MRI showed that the entire joint had inflammatory fluid around it. The sutures come out tomorrow (see pic below) and I start occupational therapy in a couple of weeks. Adding insult to injury, I just had thumb joint replacement on the left side six months ago and it’s making use of the left hand much trickier. At the same time, I’m in the midst of getting radio frequency ablation (“burning”) of nerve roots on the facet joints in both the lumbar and cervical regions of my spine. A future post will describe this process in more detail.

The scars of surgery are outward reminders of the permanent impacts of RA.



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It’s been 12 days since having a second Ligament Reconstruction Tendon Interposition (LRTI) surgery designed to replace the damaged carpometacarpal (CMC) joint at the base of the thumb. This procedure was on the left thumb – the right side was done in April. Today the cast and sutures were removed (see pic below). During the procedure, the trapezium bone is removed from the wrist and a tendon is harvested from the forearm and rolled up and secured in place of the trapezium. Artificial materials such as metal and plastics tend to be rejected as artificial joints in this area.

Instead of being placed in another cast for 3 weeks, the surgeon placed me in a splint with the notion that periodic, gentle movement of the metacarpophalangeal (MC) joint just above the CMC joint may prevent stiffness and freezing of the joint which would ultimately compromise and damage the replaced CMC joint. This is what has happened with my right thumb which my surgeon and rheumatologist suspects is from RA-induced inflammation since RA isn’t really under control at the moment. My occupational therapist spent considerable time attempting to “unfreeze” the joint to no avail. A procedure to either remove the synovial capsule and surrounding soft tissue or to permanently set the MC joint with screws at a 25 degree angle is being considered once the left thumb heals enough for everyday functioning.

This is my 10th surgery in 10 years since being diagnosed with RA and it’s pretty much a toss up as to the difficulty of recovery between this procedure and cervical (neck) discectomy and fusion surgery. My surgeon says the hands contain many nerve endings and it’s difficult to function without the grip of a hand for such a duration. Occupational therapy will begin around 8-10 weeks.


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I  set up a fundraising team to help. Please consider donating $20 for this worthy cause. Click on the link below…


Living With RA Team 



  • 1 in every 4 Americans are suffering with some form of arthritis
  • Equates to an estimated 54 million Americans, including 300,000 children
  • Government funding of research is down 22%
  • Funding for newer investigators with new ideas is down considerably more
  • We have MORE qualified research than we can currently support
  • The problem is BIG, but together, through research we can cure arthritis!


  • Over 200 scientists funded since 1970
  • Our research projects have led to new information and treatments
  • World-renowned Scientific Advisory Board
  • 4-Star Charity Navigator rating for 9-straight years (top 1% of all US charities)
  • Gold Seal of Transparency from GuideStar International
  • On average, over 90% of every donation is placed into research programs

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Still Living With RA

I haven’t written a post in a while and I’ve fallen off the map of the RA advocacy scene. But it seems with good reason. We moved to California 14 months ago and life’s been a little crazy. But I’m still around and fighting RA. Thanks to Lene at The Seated View for shaking me back to my senses and checking in on me. Here’s a brief update…

  • Warm weather helps me feel better and perpetual sunshine provides a real mental boost. But it does not stop the biological processes of RA. Funny thing, it’s thundering and raining for the first time in months as I write this – we’ll take it!
  • Tried two biologic medications off label. Cosentyx and Stelara are approved for psoriatic arthritis and ankylosing spondylitis but not RA. They did not help me.
  • Started the newly approved Sarilumab (Kevzara). Where do they get these trade names? I picture a group of marketing people sitting around a room throwing names on a board until one sticks. It’s an IL-6 inhibitor like Actemra which caused my lipids and triglycerides to skyrocket so we’ll see what happens. Injections every two weeks and they sting like a wasp!
  • Made a trip to San Francisco and went to the Legion of Honor fine arts museum. Was pleased to see a number of paintings from Pierre-August Renoir (see below). It’s amazing to think that he painted with severely deformed hands from RA.
  • Had thumb joint replacement surgery in April (see gnarly pic below). It’s been a tough recovery but the surgeon warned me that it would be a year before I felt like it was worth it.
  • Have left thumb joint replacement surgery scheduled for October. Ya think I’d learn my lesson from the right side but the pain is just too much to handle anymore.
  • Finding new doctors in a new state is like dating all over again. But kept my wonderful rheumatologist who is worth every cent of the flight back.
  • A visit to a hip specialist in a few weeks may help explain what’s going on in that region. Maybe time for another MRI and steroid injection (or more?) since it’s been a couple of years.
  • Paperwork and phone calls with a chronic disease and disability is overwhelming at times.
  • A new puppy always makes life a little more enjoyable (see pic below).
  • The new church we came to help start is going well and we’re blessed to watch what God is doing.

I promise to write more in the future!




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Please consider participating in a study called SNAP about how arthritis patients use online information. Below is information about the study. If you are interested in participating, contact the research coordinator as soon as possible since recruitment is closing soon. The study is sponsored by the Rheumatology Research Foundation which is part of the American College of Rheumatology – the professional organization for rheumatology physicians.

We arcapturee funded by the Rheumatology Research Foundation (RRF) which is a non-profit organization dedicated to research to improve the health of people with arthritis. We are recruiting people with RA to be a part of our study in the US and Canada. The study is being conducted by investigators at the University of Texas MD Anderson Cancer Center in Houston, Texas, USA. Participants on our study will be asked to either read and review online educational materials or be a part of an online community to discuss RA. Participants will access study webpages and also complete e-questionnaires at three time points. The study is online only, there are no in-person study visits. We send you the study material and web links via your email address.

In order to see if you are eligible, we would like for you to answer the following questions:

  • Have you been diagnosed with rheumatoid arthritis by a rheumatologist?
  • How long ago were you diagnosed with RA?
  • Are you 18 years or older?    
  • Do you use the internet at-least once a week?
  • Are you familiar with and participate in social media (For example, Facebook™)?


(713) 563 8817

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What a great group of writers/RA advocates have been recognized once again for sharing their journeys about RA. Healthline announced their list of best RA blogs of 2016. My blog made the list again and I’m honored especially considering my lack of writing lately. Two shoulder surgeries, a move, and going on full time disability has taken a toll but hasn’t knocked me down!

rheumatoid arthritis best blogs badge

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It’s been so long since I posted here and felt that some sort of update was in store. I’ve been on short term disability (STD) since January 1st. I must be on STD for six months straight in order to move to long term disability (LTD). My workplace has been wonderfully supportive and has great benefits to aid in this process. All benefits remained in place during this time. Not working has been a real blessing in terms lowering stress levels and helping with rest. While being a tough decision, it was clearly the right decision. I walked away from a lifelong career of teaching that was very rewarding and was what I was made to do. Long term disability starts July 1 at which time I will officially be separated from my employer and will receive paychecks from the LTD insurance company and benefits through COBRA. I will continue to engage in some consulting work to supplement my income.

In the midst of the work transitions, a 7th joint surgery occurred a couple of weeks back. This was on my left shoulder and was basically a repeat of the surgery done on my right shoulder in January. The AC joint was damaged by RA to the point where there was no cartilage and bone was rubbing on bone. The surgeon cut off the end of the collar bone and shaved the shoulder bone to clean up bone spurs. The rotator cuff was in good shape on the left shoulder unlike the right side. Arthroscopic surgery is the way to go as the healing goes much quicker and pain is much less. The shoulder remains quite stiff and I can’t use it much for the next couple of months. However, the right shoulder is causing me more discomfort and that is because the surgeon repaired the rotator cuff which takes a long time to heal.

I haven’t been on any RA treatments since last December. I’ve run the gamut of most available RA treatments and it’s evident that they either haven’t worked or the side effects including migraines, GI issues, and infections were unbearable for me. I can say that not taking meds allowed me to avoid fighting the side effects – this has been pleasant. But the RA disease process has picked up during this period. Joint swelling, pain, and fatigue are on the rise and I know that this can bring more damage from the RA processes. I see my rheumatologist next week and we’ll develop a plan for the future.

In the midst of the craziness, we are moving from Seattle to San Luis Obispo County, CA this summer. This decision was primarily based on our desire to help some friends start a new church in the city of San Luis Obispo near Cal Poly State University. One of our Associate Pastors at our home church in Seattle will be leading the church and there is a team of people going along to help. The new church is called Vista Church. Some people wonder why we would do such a move but this is how churches get started – they are planted by people. Not only will we be able to help with the new church, but the move to the Central California coast will allow me to enjoy sunny and warmer weather and hopefully this will make my body feel better. Our house already sold in a couple of days (the market is nuts in Seattle) and we are currently looking for a house in Cali.

Transitions are a part of life. It’s much easier to sit back in your cozy chair and avoid changes. But getting on the roller coaster and enjoying the ride instead of fighting it makes the journey much more enjoyable. I’ve learned to trust that God will take care of you no matter what transitions life brings.


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My Battle with RA

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My Rheumatoid Arthritis Diary

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